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Wednesday, February 10, 2016

Feeding Tube Awareness Week - Day 4 (How I Feel)

So, it's Feeding Tube Awareness Week, but what do families really think about feeding tubes, about how our lives have changed since one or more of our children got one, and about the daily life with one? Well, I am going to share me and my husband's thoughts and feelings, what I have heard from other parents, and maybe a few quotes from my extended family members.

Other parents I have met and talked to have very similar feelings. I have yet to meet one that, down deep, doesn't love the feeding tube. Oh, they wish their kiddos didn't have to have it, they wish they were healed today, they wished they could eat by mouth in a way to sustain their lives. But, seeing as their children't aren't there yet, they are happy that this tube is available and saving their child's life. They don't view it as a sad or horrible thing. It's a blesing.

I decided to take the easy way out, I simply asked my family and friends a few questions. I will share them and their responses below.

For my extended family and friends, I asked the following:

When you look at our son, what are your feelings towards the feeding tube and regimen he has? Even if you don't fully understand it's intricacies, compared to how you felt 16 months ago when we first said he was having the surgery, how do you feel about it now? How has it helped his life, his health, anything else about him you feel it's affected? Is there anything you would like to share with those who are facing this road? Is there anything you would like to share with the extended family members or friends of those who are about to head down this road?

A friend of mine responds:

I was heart broken for him to have to endure surgery and anesthesia. Worried because I knew that he didn't respond to meds the way most do. Sick to my stomach knowing the worry his momma was going through and that I couldn't at least be there to hold her hand and pray. BUT... grateful for a procedure that gives his wee body the nutrients it needs. That this can make all the difference in the world in how he develops not only physically but neurologically and emotionally.

And lets face it. Momma and Daddy sleep better knowing their son's stomach is full and full of all the good stuff!!!

My Mom responds. Take note, she is an RN and a Nana, so her view is quite different than most:

Here are my thoughts as a medical,professional and as a Nana.

First, as a medical person, I was concerned about his fragile nutritional status, yet somewhat fearful of the feeding tube. Never having cared for a G tube or a J tube, I didn't know what would be involved. Would it be easy to use and care for? Would he be uncomfortable with it?

Eventually, I saw it as a gift from God that literally saved his life and his brain from starvation. I saw his color get better, his mood and attention get better and his personality come out more.

As a Nana, I was worried about his acceptance of it, how you all as a family would be able to work it into your everyday lives and would he feel different or left out? Would he be able to eat his favorite food? Would he be hungry?

I am so thankful he was given this chance to live a fuller life than he would have otherwise

For my husband's take, I personally interviewed him. Here's what he had to say:

Q: What were your thoughts and feelings before our son got his g-tube?A: He should have had it sooner. I was nervous about the care of my son and being responsible for that. I feel like the doctors didn't adequately follow my son's care and, if they had, they would have realized he needed the tube within several months of him not meeting his calorie goals.

(me inserting a note - you will notice my husband is much more level headed and "just the facts ma'am" about life. I am the mushy teary-eyed one.)

Q: What feelings did you have the day of and 2 - 3 days after his surgery?A: The day of? I felt like the people at the hospital in charge of training us on the care of our son with the tube really didn't know what they were doing. You would think they would have started the training process before the tube was put in.

Q: How do you feel the tube has changed our son's life?A: It's allowed him to get the nutritional need to grow and develop. I think it's taken the stress of meeting his calorie goals off of him.

Q: Good and/or bad, how has it changed OUR lives?A: Good - I would say I'm seeing my son meet his milestones.
Bad - It's just the complication of planning things like going camping or to Nana's for a few days.

Q: What would you tell a dad who just heard the words, "your child needs a feeding tube"?A: Embrace it. If someone's telling you that, it's got to be bad. A lot of times you have a fear of the unknown. I didn't have that because, I figured anything would be better than seeing my child starve before my eyes. I am thankful for the feeding tube because I truly believe without it my son wouldn't be here right now.

Now, for my take:
My thoughts on my son getting a feeding tube before we actually had it? NO WAY! Just NO! It wasn't happening on my shift. My son would NOT be having a feeding tube. That was giving up. That was for kids who were sick and had serious feeding issues. Nope, not my son.

The problem is, my son is sick and has serious feeding issues. I was in denial about that. I kept thinking there HAD to be something we hadn't tried. Maybe a new therapy, a new technique, a new medication, the list goes on. I kept asking and no one had any ideas of anything we hadn't tried to get him to eat. I remember laying in bed the night before his surgery talking to my husband in the dark. I told him I didn't want this for our son. I begged him to think of something we hadn't done yet. He held me and said, "tell you what, you pray. Give this to God. Ask Him to direct us. If He gives us something we haven't tried, I will personally cancel that surgery myself." So, I stayed up for hours giving it all to God and asked for Him to guide us to what would work. Instead of a new therapy/medication/technique, He gave me peace. You know that old "peace that passes all understanding" thing? Yeah, He graced me with that.

And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus. Philippians 4:7

So, the next morning we woke up early and headed to the hospital to check in for surgery. I remember when they came to tell us our son was in recovery and we could go see him as soon as we talked to the GI and surgeon (they performed the surgery together), all I wanted to do was see his face and then see his tube. I needed to see both to know it was OK. Yes, I heard glowing reports from his doctors on how well the surgery went, how well he handled it, and so on, but I needed to see him to know this was OK. As soon as I saw his face and his sweet eyes looking at me, I knew this was OK. I asked if I could lift his gown and the nurse said it was fine. I looked and thought it didn't look nearly as scary as it did in my mind before the event.

We had a 4 day stay in the hospital (because of our silly insurance dragging their feet on getting the medical supplies he needed to go home with approved, but that's a whole other vent post for another day). He did so well. He needed a little pain management the first day, less the second, and by mid morning he was asking to go to the play room.

I remember watching with an eagle eye the first time they put something into his tube. It was like a kid watching the lunar landing on TV. I was in awe and scared that I had to learn how to do this. They were going to trust me to put formula, meds, and more into my son's tube? Were they nuts? But they trained me decently. My husband was right about the lack of training we received. I didn't know we weren't well trained until we got home into the thick of it. But we were not well trained. Thankfully there are lots of websites out there, YouTube videos, and support groups to help you figure out the intricacies of daily life with a feeding tube.

I asked my husband how the tube has changed our son's life. Wow, I never imagined how much it would change his life. I was so used to seeing a sick child that watching his weight blossom was incredible. I remember going to follow up visits and seeing that number on the scale going up. I wanted to dance down the hallway each visit. I couldn't imagine why nurses weren't high fiving me and each other, balloons being released, and dance music being blasted over the intercom. My son was growing. To them it wasn't a miracle. They saw this happen each week in their offices. But, to me, it was a blessed event. He started to smile more, have more peace about him, grow, and did better in his school lessons. His brain was being fed so he could actually think. His reading seriously improved. He has dyslexia, but once his brain started being fed, not being able to read words stopped.

Our home life has changed a lot. Gone are the days of grabbing my purse and running out the door to do something fun. Now I have to think ahead of time. I have to make sure everything he needs is packed in our backpack (my new purse). I have to make sure, if we are gone longer than a backpack will handle that I pack him a bag. We have to calculate how much food to bring, which means water, formula (if we need that), blended foods, meds, syringes, extensions, pads, and the list goes on. We have a huge book case in the area between our living room and kitchen where my pretty wall hangings used to be. Now that area houses medical supplies. I have to think about every calorie that goes into my son's mouth so I can then calculate how many calories need to go into his tube.

I hated math in school. I hated science in school. I was never the little girl that wanted to be a nurse or doctor. I am now doing math daily, science weekly and I have done more nursing procedures than I care to comment. I have been asked by many doctors if I have had previous medical training or went to medical school for even a bit of time. I laugh and tell them no. They tell me how well I pick up the medical jargon, can use it like a pro, and learn medical procedures. I laugh, point to my son, and say "this was my residency". It's true. You just learn, as a Mom in this world, how to speak doctor and act nurse. Oh, I am no where near where an actual doctor and nurse are, but I am very comfortable filling in for when they aren't around.

I like what my husband told dads when he said "embrace it". You really have to. Your child's tube is like a new family member that has to be cared for. Seriously, it is bathed, sometimes gets diaper cream, is clothed (tubie pads), is fed, and is cared for 24/7. I mean, if that's not another family member, I don't know what is. So, just go at it full force and embrace it.

I know it's scary. Unlike my husband, I was scared. He is much more level headed and factual than I am. I think with my heart. This was my baby and I hated it for him. I think what would have helped is a lot more education up front, before we even had the surgery. If you are going through this, ask for it. Don't leave until you get it. Go online, look at the support groups, check out the Facebook pages, look at the feeding tube websites (the pictures above all link to a major website). Don't be afraid to branch out and tweak how you care for your child. Be safe about it but this really is an art form and every parent ends up with their own method. You CAN do this. Pray a lot. God will hold your hand through this just like He did mine. I am here for you. You can contact me anytime. You can do this and your child will be healthier for it. That's what it boils down to, your child's health. The rest is gravy.